Gut punch! Receiving the news from my Reproductive Endocrinologist that my best bet for getting pregnant was IVF was devastating to hear. After nine months of clomid or letrozole and zero evidence of ovulation, I wasn’t expecting such drastic measures would be required for success. After trying on our own for six months, we sought a consultation from the RE as my twin sister had difficulty conceiving her first child (and was ultimately successful with clomid). Instead of having to wait the official “one year of trying” for our diagnosis, I was quickly and finally acknowledged to yes, indeed, have PCOS despite being skinny and thin and not diabetic or overly beardy.
We tried the oral medication route longer than necessary as I didn’t understand the system, the need to advocate for myself, and had a busy schedule. I was also placed on thyroid medication and metformin (usually used to treat diabetes) as well as clomid and then letrozole after I had months of nausea and vomiting (now I know this was from the metformin…go for the extended release tablets!). I don’t remember too much from the dreaded side effects except for hot flashes and sometimes crying at work.
When I told others I would have to do IVF to get pregnant I received a surprising response. “Congrats!” It was as if they thought I was already pregnant. I hated hearing this. It felt like nothing could be farther from congratulations than the need to undergo this treatment. I remember feeling like an imposter! We hadn’t tried “long enough,” not like the couples who had tried for years and years with horrible heartache. I had mostly been preoccupied with finishing my busy surgical residency than crying too much over my negative pregnancy tests. I wasn’t sure if I wanted to spend a car’s amount of money on the treatment. I was needle phobic and worried about how I would handle the medications and the crazy things it would do to my body. I didn’t even really understand what it would entail or just how rigorous an experience it would be, but it was like hearing the bad news that a beloved loved one had just passed away. I was finally faced with the hard and fast truth that my fertility had died.
I decided to time the treatment to coincide with my last few weeks of residency. I nervously told my boss about the care and necessary appointment times and luckily, he was very supportive. I had a few weeks vacation between the end of my program and my first job. The plan was to start my new job newly pregnant and deliver the baby 9 months later!
When you start IVF, you get a lunch sack full of medications and a calendar to follow. The medications start easy with small injections in your stomach (no big deal!) and advance to multiple injections per day in various places. If you have a partner, they probably feel helpless watching you go through this all and it is easy to feel very alone going through what only you can do. So, I recommend allowing your partner to be in charge of the medication calendar and administration if you can!
I did agree that the side effects of the IVF injections were easier than the oral medications. The worst part of the process is the waiting. Waiting to get on the doctor’s schedule (most clinics have “up” and “down times” when they will perform procedures and you have to coordinate your cycles with them). Waiting for your period to start (or be induced). Waiting for each time of day to remember your medications. Waiting for the next ultrasound to check the progress of the follicle growth. Waiting for the harvest, waiting for the embryos to grow, waiting for the phone call about how many survived. Waiting for the transfer and waiting to hear the results (the dreaded 2 week wait!).
Unfortunately, I had to wait longer than planned. We had planned to have my embryo transfer (when the embryo is put back in) right before starting my first job. However, my follicles weren’t cooperating on schedule and my harvest got pushed back, putting the transfer day on my first day at work. This was devastating news after years of hard work. How could I call and cancel my first day and all of my patients without looking like a flake? How would I tell my employer I am trying to get pregnant on my first day?
Ultimately, we decided to do a “freeze all,” where instead of transferring an embryo right away they would all go in the freezer for later. I assumed this meant I would be pregnant in August instead of July. It was like having to send my Christmas present back without opening it, but I knew it was the right choice. My doctor emphasized that due to my OHSS (ovarian hyperstimulation syndrome, a potentially dangerous medical condition that can result from IVF treatment), this was also the safest option.
The embryo harvest finally came. The doctor was able to harvest 33 follicles. 31 had eggs in them. 29 survived and 27 fertilized normally on their own. After 5 days, I had 6 embryos left. It is amazing how few can survive after all of that (and I wish I had been better prepared for that possibility). I felt miserable after the procedure. I stayed at home and lounged around. No exercise was permitted, I had to collect my urine and drink a lot of fluids with electrolytes. I was extremely bloated and uncomfortable and exhibited the signs of early OHSS. I had about 40 follicles in my abdomen over 1 cm in size…so essentially, I had two clusters of jumbo grapes in my belly, all with their own blood supply. Thank you PCOS! No wonder I looked pregnant and felt tight and so full!
When I called to get back on the schedule for the transfer in August, I was told I would need to wait until September to let me OHSS resolve. As it was borderline whether I had it or not, I was super frustrated having to wait even longer. I thought for sure I would be pregnant by summer! I had no idea what I was getting myself into.
The transfer was relatively simple. The ultrasound tech would guide the surgeon who had a small catheter that would transfer the embryo. We chose to transfer one embryo as that was the only option allowed us by our doctors at that stage. After transfer, you would lie still while they checked to make sure with a microscope the embryo was indeed deployed from the catheter. The worst part was waiting for about 10 minutes afterward, as I always had a very full bladder (something that aids in the procedure).
My husband and I left super excited and optimistic. We received a picture of our embryo baby and went to celebrate with Indian food for lunch, something that became our IVF tradition.
Luckily, our first 2-week wait was mostly undergone in Hawaii for a conference. It helped to keep my mind off things and be out of our routine. I did check with a pregnancy test toward the end of our trip and it was negative. I didn’t let it totally deflate me, but I did receive the disappointing news from the nurse when we returned home that the procedure had failed. I wish someone would have prepared me for that option more thoroughly. I thought for sure I would be pregnant by summer and here it was already October before we could even try again.
I didn’t know then that I would receive many more of these calls. They were always so awkward. My husband who was also a resident at the hospital was able to look up my results, so I usually knew before then. He would call and let me down easy, I would try to be brave and hopeful for next time. Then I would receive the nurses’ call, pretend it was news to me, and then reschedule the next phase. I wouldn’t cry until I was off of the phone.
It was hard to decide how many embryos to transfer for round two. We were allowed then to add an additional one if we preferred, although it wasn’t recommended. We opted to follow their recommendations and transferred only one again. And then again. Despite having great looking embryos and no other signs of a problem, things just weren’t working. I kept doing the excruciating two week wait and kept getting bad news. In the meantime, my boss at work had figured out I was doing IVF and was pressuring me to schedule things around her best schedule. This caused a lot of angst, but I tried to be accommodating as much as possible and even skipped a cycle. (That perhaps was the wrong decision, but I was trying to be a team player.)
After round three, the doctors attended a grand rounds about us (a meeting to discuss our case and get recommendations as a team). They came back and told us they recommended trying 2 embryos this time. This was surprising news as they were very against us doing that so far. They told us they “never” recommend it but in this instance, it seemed like the right thing to do. On the day of the transfer, they told us multiple times “don’t be mad if you get twins!”
By this time we had been going through IVF treatment almost continuously for 9 months. I had received hundreds of shots! (The progesterone in oil to sustain a possible pregnancy after the transfer are the worst! Depending on the nurse, I had a target drawn on my hips. Some were better than others. Numbness and bruising happened with some; others weren’t too bad. Eventually, I got over my needle phobia and found that injecting them myself was the least painful way to do it. However, I still preferred the emotional support of having my husband do it.) Multitudes of blood tests and more than my fair share of waiting and bad news. I had had multiple friends start treatment and get pregnant on the first time months after I had started.
Our next step would be to use the last of our embryos and start again with the embryo harvest, this time doing genetic testing to discover why I had been miscarrying all of the embryos.
Except this time, it actually worked! When we went in for our 6-week ultrasound, we found one heartbeat. And then a second. And then, a third! IVF has a higher chance for identical twins, and our second embryo had split!
We were told Baby C was measuring small with a slower heartbeat. We were given a 50% chance of losing the baby. We put it in God’s hands and decided that whatever happened, we would make it work, no matter how scary!
At 9 weeks, Baby C no longer had a heartbeat, but we had two healthy babies. We were grateful to be able to continue my pregnancy safely without worrying about Baby C causing complications, although we would have loved to have had that little one join our family! I only recently was able to process the loss.
Twin pregnancy was difficult! The idea that you aren’t allowed to complain after going through infertility was often on my mind, but I think is an unfair expectation! Even though a huge blessing, it can be hard! I was so grateful to be pregnant I decided no matter what happened, I would be happy with the time I had with my babies, even if we had complications or loss. This helped me stay calm during such a high-stakes pregnancy.
I delivered my boy-girl twins at just over 36 weeks. We had some difficulties with the delivery but overall, they were healthy and safely in our arms after about 2 years of so much blood, sweat, and tears (as they say). What a blessing. Our daughter’s name means “pearl,” since they came at such a great cost and were so precious.
A few years passed and I felt like I needed to try to use our last embryo. The shot regimen was familiar and also a little haunting. I had administered hundreds of shots and overcome my needle phobia, but it was almost harder this time. Before, I became like a machine, doing it day after day, week after week without much thought. This time, it brought with it a lot of emotions and fear, and anxieties from the past, even though I was essentially cured of my phobia.
On the day of our transfer I received the call from my RE as I was on my way into the hospital that they had a problem with the thaw. The embryo had split (identical twins again!) and it wasn’t looking too good. We would see how it was looking when we arrived.
We were informed that one of the embryos appeared to have stopped growing and the other wasn’t looking great. We were asked if we wanted to proceed and given a 5% success rate if we continued. We decided since it was our last chance, we better go ahead. It was devastating thinking that we were done after this, without a real fighting chance. I had already said I wasn’t willing to go through another harvest. I didn’t want to experience that again, and mostly, I didn’t want to have to decide what to do with a bunch of extra embryos.
We got the expected bad news.
When they asked me when I wanted to sign up for another round of IVF, I told them I was done. I told them I was willing to try something like clomid again if there was a chance it could work, like all of those stories you hear about jump-started ovaries after IVF pregnancies. I received a call a few weeks later from the RE asking me if I wanted to participate in a one month study using clomid and letrozole together. “SURE! I said. All for the sake of science!” I was rolling my eyes as I enrolled…I had never ovulated on those medications and with the IVF success rate at our institution at 80% over 2 rounds, I knew for sure it wouldn’t work. How could it??? After 5 days of horrible hot flashes, sleeping only 1 night, and suicidal thoughts…I found out a few weeks later I was pregnant! On ultrasound they were able to see that I ovulated three times. I teased my RE about trying AGAIN to give me multiples. He seemed pretty sheepish at the accusation. Nine months later I delivered a healthy baby girl.
Even after having my own babies, the hurt of infertility doesn’t go away, at least not immediately. It was still difficult seeing how easy it seemed others got pregnant. I had lingering anxiety and sleep disturbances, dreaming almost nightly about how I missed or forgot about some medication and was going to lose my babies (somehow, even after their birth). I don’t tend to go to baby showers (a boundary I set for myself years ago while trying to get pregnant). I was told that IVF survivors experience similar grief and emotions as cancer patients. Hearing this brought me a big sigh of relief. It gave me permission to feel how I felt, legitimized the struggle and all of the pain. While it was one of the biggest blessings of my life, it was the hardest experience of my life. It is a physical, emotional, spiritual, ethical, mental struggle. I still carry an extra few pounds I gained from my IVF that I can’t seem to shake. A few years ago, I was diagnosed with PTSD, from my IVF, pregnancies, and difficult deliveries. It was all worth it, but it took a toll.
Sometimes people ask me for advice. Here it is:
Find a support system. I felt like it wasn’t appropriate for me to talk about my IVF experience, even though I wanted to. I never heard anyone say anything about their infertility struggles and it felt somehow taboo. I finally started talking about mine and it was the best thing I ever did! I was very public and open (even wrote about it on my blog) and found an outpouring of support and many friends and family members going through the same things! I had no idea I knew so many people struggling or experiencing what I had experienced. Even if you don’t feel comfortable going public, find someone you can tell. I know people who never told a soul and suffered in silence. There is no shame in infertility. It is a medical problem, not a character problem and we can support each other as we open our mouths.
Understand that IVF or fertility treatments in general are not a guarantee for success. I wish I had known early on that the first time wasn’t a guarantee to work. Or the second or third or fourth time, for that matter. It would have prevented a lot of the impatience and heartache had I understood that.
Set some boundaries and consider having an end game. Not knowing when to stop or if I should keep going was maybe the worst part for me. At the very least, if you find things aren’t going as you had hoped, give yourself time for a break for your own mental health and to focus on yourself and your relationship.
Find your SOMEONE that you can talk to about this as you are going through it. Someone who has been through it and understands, can pep talk you through each new shot or step and help you know what to expect. Consider finding a support group or a therapist who can talk you through it all. I found myself incredibly lonely and isolated at times. My husband didn’t understand, my mom didn’t understand, even my twin sister didn’t understand. My IVF friends understood some, but even then, sometimes I felt different or alone or even jealous as they all seemed to have success with round one.
Give yourself grace and gratitude for all of the hard things you have done and are going through. Don’t define yourself by your infertility. Work on self-care, goals, or other distractions. Take a trip if you can!